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Joanne

MPA Patient Story - Joanne

Tell us a little about yourself

I am 65 years old and live in Maryborough Queensland with my second husband. My first husband passed from Cancer. My 32-year-old son also lived here in Maryborough until two years ago, when he was transferred by the QPS to the Townsville Police Force.

When and how did you first find out you had melanoma?

In December 2016, I was at the hairdresser’s when she asked me if I knew I had a pink lump on my scalp, and if I had been to the doctor to get it checked. I did know it was there, but I hadn’t had it checked.

As my husband was away at the time, it was late January before I went to the doctor who thought it was a cyst and treated it as such. But after a Biopsy, it turned out to be a Pink Melanoma Stage 4, and I was given three months to live.

What challenges did you and your family face after your diagnosis?

It felt surreal – like it wasn’t really happening to me and I just went through the motions. I did what my GP arranged, which was going to Brisbane immediately to see a surgeon, and from there on I just basically showed up where and when I was told.

My husband and son were worried of course when I was told I only had three months to live, but we didn’t concentrate that much on time frames. I have three brothers and one sister, and they all had various reactions to the news.

My sister was supportive from day one, as was one of my brothers. My other two brothers hardly reacted at all – as if it was just not happening, or happening to a complete stranger.

Tell us how your relationships were affected by your illness

My first husband’s family (who live up north) were probably my biggest supporters as were my present husband’s family who live in another state. They’d ring or text me daily for updates and to offer support and they were all very kind and caring.

I have a very close circle of friends who I go out with every two weeks or so for a smoko or for lunch. I told them all together what my diagnosis was and what the doctors envisaged as my future. A couple of them were a great support. However, one of those friends has not seen or spoken to me since that day back in 2017 – not a phone call, text message… nothing. Complete silence ever since to this day!

What got you through the most challenging times?

One of my best friends became my confidant, my rock, my absolute “person” who would listen to me any time of the day or night, let me talk, cry, vent, scream, be silent, came to my treatments with me, let me be whatever I needed to be, without judgement, anger or prejudice.

My other friends were there for me as well, but not in the way Judy was. As my melanomas increased and other treatments were given, she was by my side every step of the way.

It broke my heart when she was diagnosed with Cancer in December 2018 and died in early 2019. I was by her side right up to the last – I miss her every single day! I found Judy’s death harder to cope with than anything that was happening to me! I just could not deal with losing her!

It was at this time that my medical team suggested I talk to a professional, so I went to see a Psychologist, and have been going every month or two since (I have been diagnosed as having “survivors guilt”).

I have no side effects at all from my operation, immunotherapy treatments or radiation. I have never even had a sick day! I found that because I always look so well, even my friends have stopped asking me how I am. And I mean really asking – not the usual “How are you?” without waiting for an answer.

Some days I want to just scream out “no I am not OK – I am tired, sad, emotional, overwhelmed and fed up”.  But I just stay quiet and pretend everything is perfect. This is also how it was with my husband and son – because they have never seen me sick on the outside.

They don’t see me as anything but the strong, capable wife and Mum they have always known me as! I am reluctant to show them my “weak” side and this is a part of me that I know I have to work on because if nothing else, it is exhausting feeling I always have to be up and on.

Do you have any advice for someone facing the same relationship challenges?

My advice would be to seek out someone to be your “person” – who you can really be yourself with. Whether it be a family member, a friend, anybody who will let you be you. In my case now it is my Psychologist, but sometimes I feel sad that I have no one close like family or a friend, who I can truly be myself with.

I have now created this persona about myself to the people around me, that I have to always be the person who listens to them, who cares for them, who understands what is going on in their world, who understands what they are going through in their lives when really it is me who wants all that for myself!

My relationship with my husband has been the biggest wake-up call though – he is incapable of showing any emotions, any sympathy for how I am feeling, any understanding of my moods, of my sadness, of my anxieties. I even got him to come along to one of my appointments with my Psychologist, and he spent the whole time making jokes and making light of everything. My Psychologist said that is his coping mechanism.

He also doesn’t attend any of my Oncologist’s or GP appointments with me now either (completely by my choice) as it ends up with him talking so much through the appointment, that it becomes about him, and not about me.

I now go to all these appointments by myself – not ideal I know, but I just haven’t got the energy these days to put myself through having him there. Don’t get me wrong – he is a wonderful, caring man but just incapable of showing his true feelings!

How is your health now?

I had all my tests a couple of weeks ago and I saw my Oncologist last week for the results. He told me that I have now reached my first safe margin of being three years NED (no evidence of disease) with no occurrence of melanomas since finishing treatments in November 2018.

The only issue I have been left with from the treatments is damage to my Lymphatic System with swelling on the right side of my head, neck and ear which is where the surgeon had to fiddle with nerves to reach the sentinel node in my neck and remove Lymph nodes. I am not in any pain at all, just discomfort from the swelling which I can cope with. As long as I know what is going on, I find I can cope with anything, so far.

I am now aiming for the magic 5-year clear milestone in 2023!

Tell us about your involvement with MPA

I have been a member of MPA for a couple of years now, and I find it very therapeutic. I know we all have different experiences with Melanoma, and no two cases are the same, but I found that no one understands how we are really feeling unless we have walked in those shoes – the emotions, the fears, the absolute dread of what might come next – the anxiety we go through with every PET Scan, MRI, blood test etc.

How has melanoma cancer affected your outlook on life?

Having Melanoma Cancer has made me realise that I am stronger than I thought I was. I always wondered how I got through nursing my first husband for six years with his battle with cancer, in and out of the hospital, operation after operation and then in and out of Palliative Care for the last nine months of his life.

I got through that, whilst raising my son (who was four at the time of my husband’s diagnosis) at the same time making sure that he went to school, did his sporting activities, whilst I was caring for a sick husband, and holding down a job as the sole bread-winner as my husband was too sick to work. I chose not to let things defeat me!

What I’ve learned is that you just have to live in the moment because that’s all we have.

Do you have a motto or personal mantra?

God doesn’t give you anything that he doesn’t think you can handle!

I’m happiest when…

I know my son is safe, healthy and happy, my husband is healthy and out doing what makes him happy, and I am at home with my dog!

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